January 24-25, 2023
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The NIDCD sponsored a webinar/workshop on January 24-25, 2023: “Minimally Verbal/Non-Speaking Individuals with Autism: Research Directions for Interventions to Promote Language and Communication.”
This workshop reflected NIDCD’s long-standing efforts to encourage and support research focused on minimally verbal/non-speaking individuals with autism, as well as research on augmentative and assistive communication for a variety of populations. A 2010 NIDCD workshop focused on nonverbal children with autism resulted in funding opportunities and prioritizing of research projects on the topic. A follow-up to the 2010 workshop was deemed appropriate and timely to address novel interventions, research designs and methods for intervention studies, and meaningful outcome measures. The goal of the 2023 workshop was to foster the development of critical research studies addressing the varying communication needs and abilities of this population.
The presenters and discussants represented a wide range of backgrounds and perspectives. Active participants in the workshop included individuals on the autism spectrum (both speaking and minimally verbal/non-speaking, with a range of communication skills), parents of minimally verbal/non-speaking autistic individuals, researchers, and clinicians and educators with many years of experience in the field of autism. In addition, there were presentations about interventions and research findings from non-autistic but non-speaking populations, including those with co-occurring cognitive disabilities, to allow cross-fertilization of approaches to inform autism research.
Informative, lively, and civil discourse characterized the meeting, which involved not only the invited presenters, but more than 200 individuals viewing the webinar via a live NIH videocast.
Several themes emerged over the two-day meeting, including the need for research to address:
- Participatory research. Engage non-speaking individuals and other stakeholders as collaborators at all research stages, including conceptualizing, planning, implementing, interpreting, and disseminating research.
- Improved technologies. Encourage research and development of: augmentative and assistive communication (AAC) devices that incorporate recent advances; new augmentative tools with age- and gender-appropriate speech generation; and artificial intelligence (AI) or other advanced technology to better convey the social nuances of communication (e.g., sarcasm, emotion).
- Heterogeneity of this population. Characterize possible subgroups of minimally verbal/non-speaking individuals with autism to guide intervention options. Seek strategies for determining individual and stakeholder needs, given heterogeneity.
- Development of or use of new research designs that can personalize interventions. Identify support needs for those of different ages and varying abilities. Develop novel and effective interventions for individuals unable to use or unsuccessful with AAC technology, such as approaches using sign or gesture. Seek methods for identifying fast, slow, or non-responders to support a precision medicine approach to efficiently match individuals to effective treatments.
- Novel areas of intervention development. Focus on interventions and support strategies for increasing independent usage of AAC devices for full communication of thoughts and ideas. Address literacy development, receptive understanding, motor functioning, and other related skills.
- Assessment for and outcomes of intervention. Develop and promote means of assessment of receptive understanding, cognition, and brain and behavior readiness. Identify meaningful intervention outcomes that consider developmental stages and incorporate input from minimally verbal/non-speaking individuals and their families.
NIDCD, possibly in conjunction with other NIH institutes that support autism research, will consider next steps in addressing the many research opportunities discussed at this workshop.
Videocast recordings of the workshop
View recordings of the two-day workshop on the NIH videocast website:
Kasari and Tager-Flusberg
- Minimally verbal school-aged children with autism spectrum disorder: The neglected end of the spectrum
- Assessing the minimally verbal school-aged child with autism spectrum disorder
Saul and Narbury
- Feasibility of an app-based parent-mediated speech production intervention for minimally verbal autistic children: Development and pilot testing of a new intervention
- Does phonetic repertoire in minimally verbal autistic preschoolers predict the severity of later expressive language impairment?
- Meta-analyses of variables related to instruction in augmentative and alternative communication implementation
- Understanding definitions of minimally verbal across instruments: Evidence for subgroups within minimally verbal children and adolescents with autism spectrum disorder
- A full semantic toolbox is essential for autism research and practice to thrive
- Language in Autism Research: Accurate and respectful
- The importance of deep speech phenotyping for neurodevelopmental and genetic disorders: A conceptual review
- Profiles of vocalization change in children with autism receiving early intervention
- Predictors of expressive language change for children with autism spectrum disorder receiving AAC-infused comprehensive intervention
- This is not about me (film)
- Remarks to the Interagency Autism Coordinating Committee (IACC) - April 2022
- Thoughts from an autistic AAC user after the April 2022 meeting of the interagency autism coordinating committee
- LISTEN: A short film made by and with nonspeaking autistic people
- Incorporating a peer-mediated approach into speech-generating device intervention: Effects on communication of preschoolers with autism spectrum disorder
- A comprehensive peer network intervention to improve social communication of children with autism spectrum disorders: A randomized trial in kindergarten and first grade
- New and emerging AAC technology supports for children with complex communication needs and their communication partners: State of the science and future research directions
- Designing effective AAC displays for individuals with developmental or acquired disabilities: State of the science and future research directions
- Using AAC video visual scene displays to increase participation and communication within a volunteer activity for adolescents with complex communication needs
- “Two friends spending time together”: The impact of video visual scene displays on peer social interaction for adolescents with autism spectrum disorder
- Systematic review of AAC intervention research for adolescents and adults with autism spectrum disorder